Movie Review - A Mother's Courage: Talking Back to Autism

My husband and I recently watched the documentary A Mother's Courage: Talking Back to Autism. It is the touching story of a family who live in Iceland seeking more information and help for their youngest son, Keli, who is severely affected by autism. Keli's mother, Margret Dagmar Ericsdottir, a movie producer, sets out to film her journey so that she can share it with us. She visits many experts in Europe and the United States. Among these, she interviews Temple Grandin, who was diagnosed with autism and is now a Professor of Animal Science in CO and an autism author and advocate. Among other researchers she meets Dr. David G. Amaral who is the Director of Research at the Davis MIND institute in CA. Eventually, she finds Soma Mukhopadhyay who worked with her own autistic son in India and developed the Rapid Prompting Method (RPM) - a unique style of education and communication through tearing paper, writing, and pointing. Soma founded HALO in Austin, TX, where she continues to refine her methods and teach them to others. Along the way Mrs. Ericsdottir meets other parents whose non-verbal children were helped by RPM. They are able to use letter boards and electronic augmentive communication devices to express their thoughts and demonstrate their ability to learn in spite of all of their challenges. The movie itself is quite moving. One cannot help but love Keli and root for him as he begins to use RPM to communicate with Soma and his mother. Director Fridrik Thor Fridriksson is masterful in his use of dramatic cinematography to weave the tale of the mother's journey with the son's progress. Images from Iceland's rugged and beautiful scenery give some physical sense to the treacherous path this family must walk. I like that the film just tells this family's story without getting caught up in any of the controversies that surround autism (and there are many); yet it also gives a level-headed description of the various challenges that individuals with autism face. In this way it is a great awareness tool, particularly for families and friends of an individual who is non-verbal.

That is not to say the film is not controversial. I know there is some debate regarding the use of facilitated communication (FC) which looks at least on the surface like RPM. This article nicely summarizes the pitfalls of FC. The risk for fraud is great. If the facilitator knowingly or unknowingly guides the communication of the non-verbal individual then no true communication has occurred. If false information is passed it could be damaging to the affected individual or their family or caregivers. RPM is apparently distinct from FC in that no physical support is given to the non-verbal individual as they point or type. HALO has a frequently asked questions page where they explain the differences as they see them between RPM and FC. I haven't had much time to research and delve into this controversy, so I recommend doing your own research. My gut feeling tells me there is certainly space for fraud to occur and that great care should be used when investigating and using such techniques with anyone.

Finally, stories like this always make me wonder...what has happened since it started? The movie was made in 2009. What has happened to Keli since the film was made? I did a little Google searching, and didn't find much direct information, but evidently Keli continues to use RPM to communicate with his family, and to write poetry. Kate Winslet, who narrates much of the documentary, is working together with his family and a group of Hollywood celebrities to publish some of his poems as a way to raise funds and awareness for families affected by non-verbal forms of autism. You can read more about that project, The Golden Hat, here. It is due for release in November 2011 - I am not much of a celebrity-phile, but I'll be watching for this.

This individual story is heart-warming, and the ideas and questions it surfaces will draw in a broad audience. As always your thoughts and comments are welcome. 

Movie Review - Loving Lamposts

First, my apologies for disappearing for a week. Last week was supposed to be my "light" blogging schedule, but not quite THAT light. We had an urgent accounting project dropped on us, which basically left me thankful that our family has our own issues and not another person's. Maybe God really does give us just what we can handle.

Meanwhile, I'm resurfacing just in time to hit the review post with a documentary called Loving Lampposts - Living Autistic by Todd Drezner. The title refers to Drezner's son's obsession with lampposts. There is a park near their home with old-fashioned looking lampposts and the little boy has named four of  them and likes to visit them often to give them hugs and whisper sweet endearments. This is a charming characteristic most likely springing from his autism spectrum disorder. His father set about making this film in an effort to cut through many of the controversies surrounding autism, revealing the double meaning of the title. You can imagine the unfolding story as one family's journey, lit by each discovery as they seek to understand and love their son. The film ends up being a thumbnail sketch of the history of this challenging disorder, interspersed with some of the key players and their influence on society's awareness and understanding of autism.

Thirty years ago only 1 in 2,500 children was diagnosed as autistic, today as many as 1 in 110 bear that diagnosis, worldwide. Is this an epidemic? Drezner interviews parents of adult individuals with autism who grew up in the 1950s, back in the day when children with autism were usually diagnosed with schizophrenia. He talks to adults with autism who grew up in the era when autism was equated with being non-verbal, so verbal children with other symptoms of autism were labeled psychotic or neurotic. He talks to medical doctors who take the view that autism is a medical condition related to environmental toxins, and to parents who have used non-traditional biomedical treatments (like chelation, hyperbaric oxygen, and pro-biotics) to "recover" their children. The vaccine debate is aired. The secretin scandal exposed. The question of "functional grades" is considered. I think the only controversy not discussed is whether a person "is autistic" or "has autism."

Though respectful and even handed, the film makes it clear that Drezner does not fall into the camp of people who consider autism to be a disease. Obviously there is some biophysical/biochemical/neurological difference in the brain affected by autism, but Drezner argues that it should not be placed in the same category as cancer, for example, or diabetes, where a physical problem must be made right in order for a person to live and thrive. He comes down squarely against the notion that vaccines have any causal relationship to autism. He is empathetic toward parents who seek out alternative therapies as a means of "doing something" for their children, but in the end his own view that autism is a disorder that must be accepted and understood as a "different way of viewing the world" rings out.

I have previously published my own research into the "recovery movement" and still want to be clear that our personal story does not line up with the medical issues that some other parents of children with autism face. Our daughter has never experienced seizures or severe gastro-intestinal distress (unless she has the flu). She has no known food sensitivities and seems to have been on a slower developmental trajectory since birth or at least very early newborn days. Still it is hard to discount another parent's story, and I still wonder if we all aren't describing two (or even more) disorders with similar symptoms but different underlying causes. The old analogy of blind men describing various pieces of an elephant to each other and arguing about what an elephant is like comes to mind. In this case perhaps each blind man thinks they're describing the same animal, but perhaps instead one is feeling a kangaroo while another is feeling a wallaby. Some pieces are the same, but in the end they are a different beast.

My favorite portions of Loving Lampposts are when we see and hear from various adults with autism. There is an older man who makes beautiful pottery to support himself in an apartment where various individuals assist him in daily tasks and routines. One woman particularly affected me because she prefers to speak through her computer, though at one point in the film she does speak with difficulty. Her computer lets her intellect shine through as she composes quite cogent responses to fairly philosophical questions. Perhaps my favorite is the woman who decided to keep a pet refrigerator. I feel I have a lot to learn from these adults who are able to express what they have learned about themselves and about autism along the way. I know it helps me understand better how my daughter sees the world around her.

This is a compelling film. I did not expect my husband to view it with me, but after standing through several promos of other films marketed by the same studio he eventually sat and watched the entire film. It opened some lines of discussion for us that we had never voiced before. I would recommend that anyone who wants to understand more of the history and controversy swirling around this increasingly common disorder should watch this movie, and soon. Loving Lampposts has been making the circuits of independent film festivals and will be released on DVD on March 29, 2011, just in time for National Autism Awareness Month (April).

Disclaimer: Cinema Libre Studio sent me a promotional copy of Loving Lampposts for review. I received no other compensation, except opened eyes and a warmed heart.

Movie Review - Race to Nowhere

It's past my bedtime, and I haven't finished reading the book that I wanted to review next. So...I thought I would re-post a review from way back when not so many people (well even fewer than now) were reading Simple Life. My first review ever is posted below. Since writing this the film has been released and is now called Race to Nowhere. I have not seen the final version yet. You can look for a screening near you here. I would love to hear comments from anyone who has seen the movie. With all the debate about education these days, this movie takes a different tack...

I attended an advance screening of a film this evening hosted by our local library and learning center, and the film's producer (Reel Link Films). The film's maker, Vicki Abeles, lives in our area and has travelled across the country to gather interviews for the film. The film is called "Slipping Behind" and it is about the pressures on youth, particularly high school students, but also as young as 3rd grade, to excel at school, in sports, in the arts, and in other extracurricular activities. Among the shocking content I heard tonight:

• Applause for a 15 hour/week limit on high school sports commitment (n.b. this is still more than 2 hours/day on top of school work)
• Success is currently thought of as constant work, and being good at everything.
• In the 1940s high school students did 3-4 hours/week of homework; now it is more like 3-4 hours/day.
• 80% of students admit to cheating in some form because they don't feel they can do all of the work on their own. This is often viewed as "borrowing" someone's work.
  
• Adolescents need 9-11 hours of sleep each night. Many high school students are getting only 4-5 hours of sleep each night.
• What might be an escape from the stress of school - sports, music, theater, etc. often turns into a new form of stress as the competition levels increase or when the student feels they cannot do something they love because they don't have time for it.

What drove me to attend this meeting is the nagging feeling that it spells disaster for children with special needs and those at risk if even the brightest and best are overwhelmed by the current atmosphere of pressure-cooker achievement. In the end the film questions whether we're even teaching youth the right skills when in the work force they will succeed most by being flexible, optimistic, enjoying their work, and being able to work on a team. We are failing ourselves and our children by putting pressure on GPAs and test scores because the best conceptual learning does not occur under pressure. It happens with real world applications and time for exploration. If students who learn things readily and need only a modicum of discipline to focus on required tasks are struggling to succeed, how will the child who struggles to read or write or whose attention drifts easily be able to even subsist?

I'll plan to write a response to these questions from a Biblical perspective in my next post. It would be easy to get wrapped up in fear with these ideas floating in my mind, but I will trust instead that God has the answer.

Part two Achievement
Part three Achievement
Part four Achievement

DVD review - Scholastic Treasury of 100 Storybook Classics

In retrospect this set of DVDs was one of the best Christmas gifts we received last year. Thanks to my dear Sister-in-Law we now have hours of enjoyable classic children's literature on video. Less than two months of shopping days left, you know, so if you're looking for a good gift idea...I think the link above is the set we have, but if not it is similar enough to be equally well received.

We try not to let the children watch "a lot" of "TV". When we do it is always pre-recorded so that it comes to a definite end and there's less inclination to watch "just one more show." Now that my littles are in pre-school three days a week, we are watching even less, but it is still my go to when it's time to make dinner, or work on some project and the children are bouncing off the walls and each other. We also have a DVD player in our mini-van, and while we aren't doing much driving these days, when we do drive it is usually a 20 minute or so jaunt one way. Honestly I'd rather not break out the DVD player except for longer trips, but I have to admit that sometimes these family drives are an opportunity for adult conversation in front while the kids watch a video in the back. We also usually try to stick to "educational" shows...those that encourage some "interaction" etc, etc. Still with all of these conditions, boundaries, values and limits I feel nagging guilt sometimes that I am letting them have too much screen time.

Enter the Scholastic Treasury DVD set in our video library...and the guilt is considerably eased. Yes they are still watching "TV" but they are also being introduced to a lot of wonderful classic children's literature. Harold, as pictured above, with his magic purple crayon; Max, King of all Wild Things; George the Monkey; and Harry the Dirty Dog are just a few of the wonderful characters my children have met through these videos. Sometimes my daughter will see the book afterward at school or in the library and will be interested in reading it because she knows the story from the video. The stories are narrated and sometimes set to music. The images are often charming stills taken from the original books. The text of the story shows up in subtitles and changes color as the story is read so it encourages reading skills. They are pleasant for me to listen to. I've reacquainted myself with stories from my own childhood like "Why Mosquitoes Buzz in People's Ears." (remember that one, Chris?) We keep several of these in the rotation on the DVD player in the minivan, and the stories are a good length for a longish errand. Many of these have become favorites. My daughter is particularly enchanted with the one that has primarily dog stories on it. I believe it is part of her ammunition to weaken my stance on waiting a few more years before we add a canine to our chaos. They appeal also to my little preschoolers, so in our experience 2.5 years and up find these quite fun.

The only odd thing about these is they interfere with the digital clock on the minivan DVD player. Normally after you start playing a DVD the time counter for the show is displayed for several seconds and then the display changes to the clock. With these DVDs unless you start from the beginning menu each time (not when we had to leave the car mid-story...un uh) the clock will not display. It's not great for when we're trying to get somewhere on time and I can't tell if I need to hit the fast lane or if we're actually prompt for a change. I can always glance at my watch instead, but it is less convenient. Somehow I doubt that other people will have this same issue...and seriously if that's the most negative thing I can say about these...really? If you don't already own them go get them. Follow the link to Amazon. Really.

Movie Review - Lorenzo's Oil

You may notice that I haven't reviewed very many movies here. My husband and I rarely get the chance to watch movies, even at home. By the time we get our kids in bed, even if we don't have some urgent pressing project it is usually too late in the day for us to consider beginning a full length movie, especially given that most mornings we have to get up early and start all over again. It's just a fact of where we're at right now. When we do get to watch a movie I feel guilty putting a movie in that's "just for me." Lorenzo's Oil definitely fit that description. I've been wanting to watch it again ever since I started blogging. I think the mere fact that my husband got into the movie almost as much as I did is in itself high praise. I first saw the film ca. 1994 while studying organic chemistry at Berkeley. I watched the movie with some fellow graduate students and we were all challenged by the strength of the characters presented in this story. Little did I know what inspiration they would later provide to me. There are so many facets to this story that I will explore several different related topics in the next several posts.

This movie came out in 1992 and depicts the true story of Lorenzo Michael Murphy Odone and his parents. Lorenzo's father, Augusto Odone (Nic Nolte), and mother Michaela Odone (Susan Sarandon) refuse to give up the search for a treatment or cure for their son's devastating metabolic disorder, adrenoleukodystrophy (ALD). They begin as many parents of special needs parents by seeking a diagnosis to explain Lorenzo's degenerating motor skills and behavioral issues. They take him to one of the world's foremost experts but bypass the slow lane of medical research and through their own study determine a course of treatment that eventually helps other boys with the same diagnosis avoid the cascade that leaves Lorenzo dependent on round the clock medical care for his every breath. They are able to arrest Lorenzo's "inevitable" decline and, though the movie was produced when he was fourteen, he far outlived the original prognosis of death by age 8 by surviving to age 30. He is survived by his father.

The cinematography in the movie is stunning and of highest quality. There are highly dramatic scenes that left me fighting back tears, or just letting them flow. The emotional roller coaster of confusion, assurance, despair, determination, disappointment, guilt, love, joy, and perseverance are beautifully depicted. There appear to be some minor variations from the "true" storyline to heighten the drama of the movie, but the overall parents' quest to support, cherish and cure their son is well documented.

I invite you to go deeper into this story with me in the next few posts, but for now I highly recommend viewing this film if you haven't already...and maybe even if you have.

Movie Review - Emmanuel's Gift

I do not recall how I heard about this movie or how it came to be added to our Netflix queue, but I am glad I watched it. Emmanuel's Gift tells the story of Emmanuel Ofoso Yeboah who was born with a deformed leg in Ghana. Although there is a fairly large population of people in Ghana with some form of disability, they are often treated as outcasts, left to go begging in the streets. Emmanuel wanted more than this for himself, and for others. He started by learning a trade - shining shoes for $2/day. Though he actually might have gotten more money by begging, he preferred the dignity of earning a living. Somehow he learned about the Challenged Athletes Foundation and applied for a grant to buy of all things, a bicycle. Once he overcame the difficulty of riding a bicycle with one leg he decided to ride the bicycle across Ghana (about 380 miles) to raise awareness about the plight of disabled people in his country, and to spread his message of victory over disability, and dignity in personal achievement. The story goes on as Emmanuel eventually travels to the United States and decides to accept medical treatment for his condition so that he can be even more effective in bringing hope back to Ghana.

My only frustration with this movie is that a great deal of it is told with English subtitles. This is probably a personal weakness, but I have a hard time watching a movie and reading subtitles at the same time, and sometimes I lose track of it so much that I can't actually finish watching the movie. Because this movie moves back and forth between spoken and written English I had an especially hard time keeping up with all of the dialogue and the story line.

The story itself is amazingly inspirational. If you need someone to convince you that disabilities should not be allowed to exclude a person from any activity they choose, then Emmanuel would be a good place to start.